Woohoo! I just finished doing treatment #84! MY LAST ONE!!

My son climbed up in my lap and took a picture with me doing my very last treatment with the PICC line. Tomorrow, I will hopefully get my line pulled! But as of right now, they can’t find the orders from the doctor’s office. That is one headache I will definitely be glad to be rid of because her office SUCKS at follow-up with everything surrounding my PICC.

But, none of that for now. Today is a good day because I am done with my IV treatments! No more Rocephin! I will be able to take a normal bath, take a shower for the first time in 12 weeks, wash my own hair, pick things up with my left arm and best of all, get all of this adhesive off my arm!

I leave to go out of town on Wednesday so hopefully they will find the orders tomorrow and this thing will be out of me for good! Can’t wait!!

Oh and I also added the 7-Keto today as well. So lots of changes.

In the past ten days, I’ve…

• had my gallbladder removed
• finished my last Rocephin treatment
• reduced Cortef dosage
• reduced Armour dosage
• added three new supplements (Ginseng, Gingko Biloba and 7-Keto)
• been out of work (first day back was today)

I’m still not feeling that great but my period started today so that’s to be expected. Not to mention all of the changes recently. So I just need time to adjust.

I’m dreading starting the Doxy again because of the nausea but I’m hopeful that the lower dosage will keep it away. We’ll see!

I’m just happy I’m done with my PICC!!

Apparently, I don’t!

I went out for lunch with a coworker a few days ago. When my food arrived, I tasted the hamburger and it was really strange because I could feel it in my mouth but it didn’t taste like much of anything. Then I tasted one of my sweet potato fries and it tasted the exact same – like nothing. I asked my coworker to taste it because I was sure something was wrong with the food. Nope, tasted fine to him.

So what in the heck is going on?!

I’ve noticed over the past few weeks that things weren’t as flavorful now that I think about it. But this was the first time it was like I was eating air. Since then, I’ve noticed I can only taste the salt on food and I can taste a little bit of flavor in my protein shakes. Other than that, it all tastes the same.

Do you know how completely uninterested you are in food when it all tastes the same? I basically don’t care if I eat AT ALL now.

So when I went to see the NP today, I mentioned it to her and she flippantly said oh yeah, that’s a side effect of the medication. It may come back after you stop it. If it does, it could take a few months. May come back? If it does?

Have I mentioned how much I HATE this stupid disease and everything that surrounds it?!

Then she told me that my bartonella test came back negative. I wasn’t really surprised because many other Lyme patients have told me in the past week that the possibility it will show up, particularly on antibiotics, is not good. It’s one of those that is usually clinically diagnosed. And she’ll never treat me for it without a lab result.

We went over my symptoms and the fact that the neurological ones are still hanging around and she said it looks more and more like I’m going to go for the full 12 weeks. And she seemed irritated by that. She told me to expect that my insurance will quit paying very soon. Thanks for all the encouragement….

After today, I never have to see the NP again (hopefully) and can just see the doctor. So there’s my bright spot for the day because there isn’t another one.

I went back to see the NP today. This past Tuesday marks four weeks since I got my PICC line.

The first thing I said when she walked in was “I saw the doctor last week and the first thing she said when she saw me was did you know your face…” and she completed my sentence and said “is drooping on the left side?” I said yes! She said she noticed that several weeks ago and she just assumed that I knew.

I told her I didn’t know and the first I’d heard of it was in the doctor’s office last week. She was shocked I didn’t realize it. I was irritated she didn’t say anything!

So then it was on to other symptoms. I’m still not seeing big improvement with the brain fog type issues (mainly all the neurological symptoms). She said she now doubts I’ll be done in six weeks and we’re just going to have to wait and see how this all turns out.

Which is fine by me. As I said before, now that I have the PICC in, I want the treatments for as long as possible to kill as much of the bacteria as possible.

I also told her about the foot pain I’ve been having. It actually started over a month ago but it’s getting worse. When I wake up in the morning, I feel like I’ve been standing on rocks all night. I’ve tried sleeping in different positions and nothing works. Foot pain is a symptom of one of the coinfections. I asked her if she had tested me for bartonella and she said she had not. So she ordered that test today and I’ll get the results next week.

I’ve also been having drenching night sweats, as in I need to change my clothes in the middle of the night. This can also be a sign of a coinfection or just herxing from the medications.

If it comes back positive, it will be another antibiotic by mouth added to the mix. I almost hope it does just because it would explain why I’m not seeing a big improvement. Not that I want anything else to be wrong but I just want to get better. And if there’s an infection there that’s not being treated, that’s never going to happen!

I think I’m going to have to come back to see the NP next week because of the way my schedule is working out at work but after that, it’s just the MD for me.

For the first time, I didn’t have to work at home to be able to go to my doctor’s appointment (not that I’m complaining about working from home!). I went to the new office and it’s just one nurse and the doctor there. They are set up to do infusions in this office as well and she shares the space with other physicians.

She came in and the first thing she said was “Did you know your face is drooping on the left side?”. I was horrified and immediately said no. I’ve never wanted a mirror so bad in my life! She reached over and was lifting just above my eyebrows and having me try to raise my eyebrows, smile, etc. And then she said that I’ve developed Bell’s Palsy.

Lovely.

It only happens in about 10% of Lyme patients and is a sure sign that there is neurological involvement. Not that I needed any more proof of that – I’ve been experiencing neurological symptoms for months. But this is something the doctors can actually see and know that it is happening versus me telling them about a feeling or sensation in my head or memory loss, etc.

I guess if there is one thing this confirms, it’s that I’m not vain and I don’t smile at myself in the mirror because I honestly had no idea. When I went back and looked at pictures taken in the last few weeks, it was quite obvious. It was especially obvious in a picture I had taken just after I had my hair cut but I was so focused on my hair in the picture, I completely ignored the drooping in my face. Now that I look at it knowing to look for it, it’s quite obvious and I’m surprised I missed it.

There’s no real treatment for Bell’s Palsy other than time, especially since steroids are a big no-no for any Lyme patient. So I began to ask her all of my other questions and wow, the answers were so different than what the NP has been telling me. First, she said there is a 12 week limit on the PICC line. Regardless of symptom relief, it comes out at 12 weeks because it can be more dangerous due to infection risk to leave it in. She also said she’s never had a patient who didn’t clear neurological symptoms in 12 weeks. So in that regard, they agreed. But that was about it.

The next contradiction was in how much medicine I could have through the PICC. The NP told me she would not increase my dosage beyond 1 gram per day. She told me in the past it was a possibility but when I asked again, she said they didn’t do that. The MD said they do go to 2 grams in some patients and have been known to go even higher in extreme circumstances. I had also asked the NP before about protecting my gallbladder because I had seen reports of people having their gallbladder removed on Rocephin. She told me there was no such thing and she didn’t know of any cases. The first thing the MD mentioned about increasing the dosage was the risk of gallbladder attacks and some patients requiring surgery.

The MD also told me that there are no hard and fast rules for how long oral antibiotic treatment can last. And if I’m not better at the end of the PICC line treatment, they will put me back on oral meds. The NP told me that when the PICC line comes out, my treatment is over. It doesn’t matter if I’m better, I will just have to find a doctor to treat my symptoms and I may consider going on anxiety/antidepressant medication (um, think I’ve heard that line of BS before!).

I asked her if Lyme could be cured. And she kind of smiled and said she would be thrilled if I could get to 80% of what I was before I got sick. That was really disappointing to me to hear, but it is what it is. She did say at some point, the antibiotics have to stop and you have to see what your body will do on its own but I was nowhere near that point and she would estimate I would still have several months of oral meds after my PICC line is pulled. And it can flare up again under the right circumstances. She emphasized how important adequate rest is and that I need to have as little stress as possible in my life.

The other thing that was different was that she actually did a quick exam – listening to my heart, etc. The NP has yet to lay a hand on me. In fact, the closest she’s been is a good three feet away from me.

So I really liked her. She took up a lot of time with me and patiently answered every question that I had. But I was utterly confused. How could the NP who works under the MD be treating patients in a completely different manner?

I think I will go back to the NP one more time, mainly because I want to know if she noticed the Bell’s Palsy and didn’t tell me. Then I will only see the MD from this point forward.

The nurse came today to change my dressing and draw blood. I think they are going to start coming to see me at work instead from now on. It will be easier for them and for me.

Because I’m on IV meds, I have to have kidney and liver function checked on a weekly basis. This will show them how my body is tolerating the medications. I was rather amazed at how easy it was to draw blood from my PICC. She hooks up the syringe and instead of pushing like I do with the saline, she just pulls back and out comes the blood.

So, finally, there’s a positive to the PICC, I don’t have to get stuck!!

She sends off the blood and the doctor’s office will have my results when I go in two days. As long as everything shows okay, then we just keep doing what we’re doing.

The nurse was funny when she took my blood pressure. She looked at the machine kind of weird and then asked me if I felt okay. I replied honestly and said no, I feel like crap. She said my blood pressure was really low (98/68). I laughed and said that was my normal.

Then she changed out the dressing and oh my gosh, it felt so good when she was having to do the cleaning because it was kind of like my arm was getting scratched! The itching hasn’t been too bad so far but I’m also taking antihistamines daily to try to keep it at bay too.

I’ll go back to see the doctor in two days but assuming all is okay with my blood tests, I doubt there will be much to tell.

The nurse came by last night to help me do my first treatment at home. She attached an extension line to the part that is hanging out at the top in the picture (see it here) so I can easily reach it with my right hand.

The infusion is pretty easy to do. My meds were delivered by the pharmacy via an overnight delivery (they’re refrigerated) along with all of the supplies. Other than lots of sterilizing and cleaning, I basically have to remember SASH – saline, antibiotic, saline, heparin. That’s the order that I do everything. From start to finish, it took about 40 minutes. The actual drip takes about 30 minutes so I’m sure it will get a little faster as I figure out what I’m doing.

She was surprised at the way they sent me the medication. She said most people can’t get their insurance company to approve it. It basically is like a little ball and it’s pressurized so I don’t have to have an IV pole or anything like that. I just hook it up and it runs through on its own.

She gave me a phone number to call tonight to talk to a nurse so she can walk me through it over the phone to make sure I remember all of the steps.

Within about 45 minutes after I finished the treatment last night, my head got very woozy and I felt like I had a sudden onset of the flu. I know what that is – another herx! I didn’t expect it to start so quickly so it caught me off guard. I have felt pretty bad today and while I have vacation time and could technically take off, I don’t want to use it this early in the year, especially without know what may lie ahead.

As far as how the PICC line feels, it is very weird. I feel like someone is squeezing my arm and I can feel where the line is from my arm into my chest. I can basically trace it out for you. If I try to lay on my side, I get that little heart flutter so I’m assuming it’s making the line move when I switch positions. Very uncomfortable – doesn’t take me but a second to switch positions to make that stop!

Everyone says I will get used to the line and not really notice that it’s there any more. I’m more worried about the adhesive allergy. The nurse is going to check on some other coverings we can try to use as well.

And last, washing my hair is going to be a challenge! I can’t get my arm wet so taking a shower is out and it will be difficult for me to flip my head over the tub and manage to keep my arm dry. I called my hair stylist and she said it would be $25 to wash and dry it. A few people at work called their stylist for me as well and the cheapest we found was $20. Being that I would have to go a MINIMUM of twice a week (should really be 3-4 times), there’s no way we can do that. So my husband is going to be a sweetheart and wash it for me.

It’s about time to do infusion #2….

We got to the hospital this morning at 9am and checked in. Not too long after, they took me back to get me prepped for the procedure. The nurse came in to talk to me and said they do multiple PICC lines a day and it’s not that big of a deal.

Easy for him to say!

As different people came into the room, they asked me why I was getting a PICC. When I said Lyme, they all asked me if this was my first one. So I got the idea that some people have to have this done several times….which made me wonder about the whole strict timeline I was told for treatment. They asked me about who my doctor was and when I told them, every single person said I was in good hands. If anyone could help to get me over this, it was her. So that made me feel much better about things.

I was doing okay relaxing as the team who inserts the PICC was running a little behind. But when the doors opened and they rolled in their cart, my stomach instantly started doing flip flops. I made sure to remind them that I’m allergic to adhesive and there was also suspicion I was allergic to ChloraPrep as well (what they use to clean/sterilize the skin). They questioned me on that because they didn’t know anyone with that particular allergy. But she agreed to use alcohol and betadine just in case. She said she was going to do a test patch later with the ChloraPrep.

So the team got all dressed out basically in OR gear and made my husband do the same with a mask. They draped me with a sterile sheet, covered my hair and then got started. They used an ultrasound machine to find the basilic vein in my left arm a few inches above my elbow and told me to take a deep breath. They used a numbing agent so after the initial stick, I just felt a lot of pressure and weird sensations. I had my head turned away from her and at one point, she asked me to turn towards her. I was like nooooo…..this is the only way I’m staying calm is by watching this machine on the other side of me! LOL But I turned my head and just closed my eyes.

It was all done in a few minutes. And not near as bad as I had imagined that it was going to be. They sent in radiology to check the placement with a chest x-ray. After waiting a bit for it to be read, they came in and said the placement was not right and it needed to be in further. So they came back in and threaded it further into the vein. It was just more pressure.

Then she placed the dressing and that was that. She also did do the ChloraPrep patch test on my lower arm and within a few minutes, I was ready to scratch my skin off! So I quickly washed it off and we confirmed that allergy!

They gave me the instructions for care which besides keeping it sterile includes keeping it dry (no showers!) and not lifting anything with that arm. She said some people use Saran wrap to cover their arm so they can take a shower but if it gets wet, the dressing has to be changed immediately as infection can set in quickly and the line goes straight to your heart. So any infection can be very serious.

She told me to watch for any heart flutters as that would mean the line has shifted and is “tickling” my heart. If that happens, I have to go back to the hospital for an x-ray to check the placement. See why I didn’t want this thing?!

This is how the PICC line looks:

Aren’t you jealous?

The nurse should be here soon to help me do my first infusion at home. Let the fun begin!

UGH, this is not how I wanted the day to go. When I went in and told her my symptoms seem to be worsening, I’m having a really hard time with the nausea and I’ve noticed a roughly four week cycle with flares, she said it was time to pull out the big guns.

Yep, the news I’ve been dreading – it’s time to have the PICC line put in.

I completely lost it when she said that and just absolutely cried my eyes out in the exam room. I am terrified of having the PICC line placed, I’m scared of the higher risk of infection (it basically goes to your heart!), I’m worried about having it in around a toddler who won’t understand, I’m worried about if I’m going to be able to continue to work with it, I’m worried about how my skin is going to react to the adhesive….

I guess I’m pretty much worried about everything!

She has an infusion center in her office so she sent me back there to get my first dosage today. I walk back there and they have big comfy recliners with IV poles everywhere. There’s a TV and several people were in there having treatments all at the same time. Meanwhile, I was a blubbering mess and couldn’t even talk I was crying so hard. I’m sure the nurse who started my IV thought I had lost my ever loving mind that I was bawling like a baby over a needle stick. But I wasn’t even worried about that IV, it’s what comes next.

I have horrible veins – they’re small and deep – so she had to put the IV in the crook of my arm. I had to sit there for 30 minutes with my arm completely straight at a weird angle while the medicine dripped in. They have to do one infusion in the office to watch for an allergic reaction.

After it finally finished and I calmed down a little bit, they gave me my instructions for tomorrow. I have to be at the hospital at 9am. I’ll have the PICC in place for a minimum of 4 weeks and up to a maximum of 12 weeks. They’re estimating I’ll need it for 4-6 weeks. During that time, I’ll do daily infusions at home and a nurse will come to our house once a week to change the dressing. My infusions will be 1 gram of Rocephin which should take about 30 minutes a day to do. It’s possible they will have to increase me to 2 grams at some point. All of my supplements will stay the same.

The ONLY good news with this that I see right now is that the nausea should be taken care of and no longer be an issue for me.

I came home, cried some more and called my boss to get the day off tomorrow for the procedure. Everything I’ve read online says it’s not bad, it’s just sore and feels weird for a week or so after it’s placed.

I’m sure I won’t sleep tonight. Wish me luck.